Need some advice on next steps.

[Nikko27]

This is a little long, so sorry and thank you in advance. My GI journey began approximately 10 years ago when I was a teenager. It started with not being able to keep food down and chronic abdominal pain. I the began to struggle with chronic diarrhea and constipation. My energy depleted rapidly and I was referred to a pediatric gastroenterologist. I had multiple endoscopies and colonoscopies which showed that my gi tract was indeed irritated, but there was no obvious cause as to why. I also had a gastric emptying scan which showed delayed gastric emptying. I was put on a variety of elimination diets, but the issue didn't seem to be food specific. I was tested for food allergies with no clear answers there either. Several medications were tried and failed. Eventually my symptoms eased up and I was able to have roughly a year and half of mild symptoms. I moved to college and a couple weeks into the first semester, I started getting very fatigued and shortly after that all of the symptoms had returned. I had aged out of peds and was assigned to a new GI doctor that refused to give me the time of day. He constantly made me feel like the issue was all in my head and refused to do any tests. However, my primary care doctor at the time noted rapid weight loss and ended up referring me to a different office instead. I met with a Nurse Practioner there who ordered another endoscopy during which they found extensive villous blunting in my small intestine. Blood work showed that I was also iron deficient/anemic. This lead them to diagnosing me with celiac disease. I immediately cut out gluten and was placed on iron supplements. I started to feel mildly better for a while, but then rapidly began declining again a few months later. I was then ordered to stop eating dairy as well. After a month of no dairy I still wasn't better. Blood tests were normal, but I felt awful. My fatigue grew worse. I slept all the time and couldn't stay awake. I started having chronic diarrhea again which lead me to having another colonsocopy ordered. The colonsocoy showed damage in my gi tract that could indicate mild crohns disease. However, the pathology report from the biopsies taken did not support the diagnosis. I entered a two month period where I got so sick I wasn't able to eat and was barely keeping water down half the time. I lived on Boost and Ensure shakes and ended up losing 30 pounds in less than two months. The nurse practioner I was seeing almost admitted me several times, but I managed to keep myself sustained just enough to stay out of the hospital. I was escalated to one of the MDs in the practice who read over my case and decided to trial me on a corticosteroid that specifically targeted symptoms of Crohns and Colitis. I was finally able to keep food down and the diarrhea stopped. However the abdominal pain persisted. I mentioned this to the doctor and he told me that it couldn't be an IBD then because the pain would have gone away too. He also ran blood tests for the gene needed to have celiac disease and when I didn't have that gene it disproved that theory as well. He ultimately diagnosed me with functional abdominal pain and tried to tell me that I was depressed. When I refused an antidepressant prescription, he told me there was not much more he could do. I gave up at that point and have been self-managing my symptoms now for the last two to three years. However, self managing is not working out much lately. My symptoms are gettimg worse again, but I've lost all faith in the GI community where I am and I'm not sure it's even worth seeking out a new ons. GI disorders do run on both sides of my family. Three out of four of my siblings have also struggled with undiagnosed GI issues. I am at a crossroads on what to do next. I don't want to look like I'm doctor shopping, but I also don't want to suffer with these issues anymore. Any advice would be welcome! Thanks again!

[Barb135]

Most (many) of us have some level of H. Pylori in our body.  The problem comes when it’s overgrown and takes over in the digestive system.  I’ve been tested (and treated) for it twice.  Some of the symptoms went away with treatment, others didn’t but I agree - if there’s an overgrowth of it, it can be miserable.

[JojoTate]

Hi, I know you posted a while back, but have you ever been tested for hpylori? If not, do some research into it, you’ll be surprised the level of havoc it can cause if left untreated. It’s seemingly one of the tested that many doctors don’t consider running. It took me 18 months to finally get a diagnosis after multiple gi appointments and tests..it’s highly infectious as well, so get your siblings to test for it as well.

[specialmom]

Wow, you've been through a lot.  I've never been through so much but have had my own ups and downs.  I had a duodenal ulcer that was not showing up but wreaking havoc in my life.  I couldn't eat, lost 30 pounds myself but was a child so everyone was most upset that I couldn't go to school.  I was being referred to a psychiatrist.  One last test and there was the ulcer!  Endoscopy finally found it.  A drank the chalk junk and was better in a week.  Completely better. Sigh.  So, things can be hard, I have been through it to some extent myself.

I really don't have any answers for you.  I personally would go ahead and take all the information you have and see another GI doctor and if you can get into a university hospital type of setting, you sometimes can get cutting edge doctors who would take you on as a mystery to teach others.  Now, in truth, I would personally be depressed with the situation so that is probably a little truth to that and anxiety, depression and such can cause GI issues.  Consider that treating depression might be worth a try.  Do I think it is causing all of this or it is in your head?  No.  But could it play a bit of a role, yes.  In my opinion.

And one other thing, I have a son with a very slow digestive tract.  He has sensory integration disorder and that involves communication through his nervous system.  Kids with sensory commonly have slow gi tracts. It's a battle.  It causes great GI distress for him.  We manage his through diet but know many with a similarly slow digestive tract that actually get botox injections into the abdomen and it brings great relief.  Has anyone ever mentioned that to you?